A Curse So Dark and Lonely: Mixed Feelings!
CN: spoilers; medical details in fiction; discussion of ableism
I recently read A Curse So Dark and Lonely by Brigid Kemmerer. It’s a 2019, YA, Beauty and the Beast retelling with a protagonist who has cerebral palsy, and it was the $1.99 deal of the day on Kindle. I have cerebral palsy myself, and I love fairy tales and retellings. So, I was very curious to read this.
I love the premise and liked this book overall. It reverses the traditional Beauty and the Beast story. Instead of turning from a beast back into a human, Rhen is a handsome, human prince when he first meets Harper. We later learn that he involuntarily transforms into a polymorphous monster.
In the beginning chapters, I thought Harper’s CP representation was OK. Harper certainly has way more mobility than I do. My CP has even been called mild, but CP affects each person differently. Harper notes this, which is good. She mentions her left leg dragging, muscle tightness, coldness in her muscles — all possible symptoms.
I got more skeptical when Harper does things that would be virtually impossible physically, even for most non-disabled people. She jumps through the window and down from the trellis in the high castle tower. She’s injured, but not badly.
Rhen, the Beast/prince character, has ordered his commander, Grey, to abduct a young woman each year and bring her to his castle. Each time, he hopes that this new captive will eventually fall in love with him and break his curse. Rhen’s kingdom, Emberfall, is a typical, pseudo-medieval, fantasy world, albeit with some inventive surprises. As a fantasy fan with CP, my first thought was how inaccessible a setting like this would be for me, as well as many other disabled people. Even Game of Thrones, despite the show’s flaws, adapted Winterfell for Bran. Harper notes that a warm bath relaxes her taut muscles — a believable detail. However, I wondered whether she worried about losing her balance on the castle stairs or climbing into its unfamilar, old-fashioned bathtub by herself in the first place.
Then there’s this scene:
“I have cerebral palsy,” she says quietly. “Do you know what that is?”
“No.”
“Something went wrong when I was born. The cord was wrapped around my neck, and I got stuck in the birth canal. I didn’t get enough air. It causes problems in the brain. Some muscles don’t develop the right way.”
She stops, but I sense there is more, so I wait.
“It affects everyone differently,” she says. “Some people can’t walk, or they can’t speak, or they have to use a wheelchair. I was a lot worse off when I was younger, so I had to have surgery to correct my left leg. I still have trouble with balance, and I walk with a limp, but I’m really lucky.” (Page #s and searching are not available in my Kindle, sorry!)
There’s so much to unpack here! In context, this is jarring. Harper has been abducted into a fantasy, fairy-tale kingdom from contemporary Washington, DC. She’s just starting to warm up — both literally and figuratively — to Rhen. This is a shockingly intimate, clinical description to give to someone she barely knows, who’s her captor. To me, this reads like very basic, technical research, awkwardly inserted into the story.
There’s also vague but possibly unintentional, lateral ableism here. Is she lucky to be alive, or to be able to speak, walk, and not to need to use a wheelchair? Among non-disabled people, this framing is common, but I remember seeing other people on Disability Twitter quoting this passage because they found it so triggering. I understand that an author who doesn’t have CP may not even be aware of intra-community discussions like these. However, the hierarchy of disability, or suggesting that some disabilities are superior or inferior to others, is something to watch out for before writing disabled characters.
I really liked some aspects of the fantasy. Harper’s phone, which doesn’t work in Emberfall, functions almost as the magic mirror by showing her saved photos of her brother. That’s very creative. So are the enchanted musical instruments. Unlike in the Disney versions, for example, they’re not servants turned into objects. They’re just enchanted objects, which Harper originally thinks are electronic. Stockholm syndrome is so common in discussions of Beauty and the Beast that Harper preemptively mentions it herself. Harper’s gradual adjustment, then attachment, to Rhen is well-done.
The CP representation becomes even more unrealistic, though. Later in the book, Harper successfully learns archery and how to throw knives (!!) As someone with CP, I obviously can’t say that no one with CP could ever do this. I can only say that, judging by myself and all the other people with CP I’ve known, it would be very unlikely. CP also affects balance and coordination. It can cause muscle spasticity, its opposite (ataxia or lack of muscle tone), or tremors. So, these would be impossible or incredibly dangerous feats for most of us. As Devin, co-host of #CPChatNow, once joked:
What would be the obstacles in a CP Ninja Warrior course? I think walking in a straight line, climbing stairs without a rail #CPChatNow
The book and author’s note make it apparent that it’s not #OwnVoices. That’s not inherently bad, but as I initially suspected, the author may have done only basic research. She says that CP affects everyone differently, which is true. She also repeats the common sentiment from non-disabled authors about CP “not defining” Harper. The only source she cites is cerebralpalsy.org — as I said, very CP 101.
Alexa Duncan, another blogger with CP, wrote in 2019: “Swap Harper out with an able-bodied character and you’d have the same story. Her cerebral palsy rarely affects the story in any way, aside from a few people asking her why she limps all the time.” M. T. Wilson liked A Curse So Dark and Lonely for the exact same reason that Duncan found it disappointing: “I loved that Harper’s cerebral palsy doesn’t hold her back. She’s thrown into this fantasy world from DC and quickly adapts, using her fearlessness to fight bad guys and stand up for others. Harper has to be one of my favourite YA heroines.”
In a 2019 interview, Brigid Kemmerer expressed similar sentiments about not letting disability “stop” us:
“[Interviewer]: Your protagonist, Harper, has Cerebral Palsy. Can you tell us how you came to write about the condition, and how it influences Harper’s character?
[BK]: When I was growing up, I was close friends with a girl named Erin. We grew up riding horses together. She has CP, but it never stopped her. When I was designing Harper’s character, I knew I wanted to look at the idea of curses, and how sometimes what seems like a curse to one person might not be a curse at all to someone else. I hadn’t read a book with a character with CP, and Erin agreed to help me springboard my research, and that was how Harper got her start.”
Many disabled people, including Tinu Abayomi-Paul and me, consider that attitude about disabilities not stopping us “nonsense.” I understand that non-disabled loved ones often say that out of admiration, but they don’t fully understand our internal or structural struggles, either. A non-disabled author saying that CP is “what seems like a curse to one person” and “might not be a curse at all to someone else,” without contextualizing this, makes me uncomfortable. It relates to Harper’s unexamined, lateral ableism in the long excerpt I quoted earlier: that some people can’t speak or walk, but she is lucky.
A lot of bloggers with CP, like Evie Redding, loved this book. Redding also wrote: “This review is solely my opinion. If you did not like the book or the rep in it, that is perfectly valid. I do not claim to speak for the whole Cerebral Palsy community as we are all different and bring our own unique perspectives to our experiences.” That’s so true and important to keep in mind.
Despite my frustrations, there’s still a lot to love here. Rhen is attracted to Harper and thinks she’s beautiful. There are so many self-loathing disabled characters that it’s great that Harper doesn’t hate herself or need Rhen’s validation. She’s not pitied or passive. In fact, she takes an active role in the story and saving those she loves. The book avoids the horrible “magical cure” trope. Harper is not “cured” of disability or saved, nor does she want to be. All of this is admirable and avoids the worst disability stereotypes.
I’d also like to remind the publishing industry that one character or author is not nearly enough to represent our identities. Even when they’re based on old fairy tales, a trope is not played out before diverse, marginalized people have written about it — and not even then. Fairy tales and myths are timeless and have countless iterations. Disabled writers have perspectives that vary widely from one another and from our non-disabled friends and families.
